Bling! Bling!

Driving along a lonely stretch of road, there on the shoulder, was a solitary little pine tree, with a bright red glossy Christmas ball hanging alone on a branch.


Loss and Grief and Dinner

I had dinner with my four friends last night – this is my support group and my bonding group – the ones I play with, cry with, commiserate with, conspire with. There is so much grief and sorrow in our group lately. I left last night feeling depressed and at loss. One of our group, Jackie, shared with us the stress and worry over her son-in-law, who has gradually, slowly, and resolutely lost his vision over several years. He is only 40. They have tried everything, seen every doctor, done every test, tried injections and other mystery meds, trying to save his sight. But to no avail. It stresses the family – the children are suffering – in their early teens and watching their beloved Dad lose one of the five senses that is probably the most important. I cannot imagine this.

Then there is Kathy, whose Parkinson’s is getting worse and more pronounced. She plods along, literally one step at a time, moving forward and remaining positive. I bowl with her (and Jackie) and I notice more tremors. Her once really high bowling average is now 158 (but much higher than my 103). But she remains positive and proactive – paying special attention to any changes and in her monthly meetings with her specialist, informs him of the updates. He has told her that all his patients seem to know much more intimate details of their progressive decline than he does.

Then there is Sharon, whose Lupus has deteriorated in different ways – making her joints ache, causing her difficulty in breathing, causing her to tire much more easily.

And me – while I move on to a different way of receiving dialysis, which requires two large needles every time. I am dreading it – start on Monday.

Anyway – it just seemed like LOSS was the theme for the evening. We have all lost parts of ourselves, and the stress bleeds over to our friends and our family. Mechanic Man holds on – but inside he is brewing, angry at whatever is out there that makes people he loves have to go through processes to keep them alive.

It is hard sometimes to keep “up” when everything seems to be spiraling out of control.

And yet, at the end of dinner, after all the crying and laughing and sharing, we hugged each other close, even though we will see each other in a week. These are my sisters of my heart. We share, love, and empathize, feel each other’s pain.


Hi Costs, Hi Insurance, Hi Anxiety, Bye Money

Just now, I noticed all the media attention on the Idaho Medicaid hearing going on. It’s not just Medicaid, but Medicare, health insurance, medical costs, pharmaceutical prices, the recession, so much that just adds to my stress level in a very unhealthy way.

When I first started dialysis, I had the blessing of a staff at the center who manages all my financial worries. It’s a huge relief. Dialysis costs around $250,000 a year per patient. It’s a booming business. But how much of that is actually the cost of running dialysis? That $250,000 is what insurance companies, and also Medicare as secondary insurance, pay – so what was it originally? I ask this because three weeks into dialysis, I went to Orlando and vacationed near a different dialysis center and later was billed for $8,000 for the week. (My center is $12,000 a week.) When Premera wouldn’t pay (because it was “out of network”), the Orlando center sent me a new bill, written down to $800. That is 90% of the total bill. Then, after I paid $100, they zeroed out the balance. So, dialysis for the week cost me $100.

Another little tidbit: A transplant costs around $500,000. Medicare will cover a dialysis patient for the rest of their life on dialysis at $250,000 a year. Medicare will cover the prescriptions (usually around $3,000 a month) for three years post-transplant, around $100,000, and then NOTHING. So, think about this for a second. I can be on dialysis for 30 more years ($7,500,000 – that’s seven MILLION, five hundred thousand). Or I can have a transplant with the initial cost of $250,000 to $500,000, plus three years of medication (which is required to keep my new kidney from rejecting, and that I need to keep taking for the rest of my life, not just for three more years).

My family has a genetic kidney disease that causes End Stage Renal Disease which is fatal if not for dialysis or a transplant. Two of my siblings have had transplants. My sister was doing well until the three-year period had passed, when she became solely responsible for her medication costs. She lost her job because she was out sick too many times (the result of other people’s “common cold” where she would end up in the hospital to save her kidney). (Fact: most people on dialysis lose their jobs because of all the time they are unable to be at their desks). She felt the only recourse was to sell her house, become indigent, and eventually become eligible for Medicaid because Medicare quit after three years post-transplant.

My brother had a transplant five years ago this April. The following is part of an email he just sent to me. I am fearful that the pending health care reform will further hurt the thousands upon thousands of people dependent on drugs or treatments to keep them alive. Will we all become expendable and our expiration tags pulled?


Last Monday I called Group Health Pharmacy to verify that they would not bill a 3rd party drug provider, which they will not. Then I insured that they would be able to fulfill my prescription of cinacalcet at 90MG, once a day and that I would be able to pick up a 90 day supply, verifying that I would indeed need to pay $1954.50 up front. Tuesday I showed up at the pharmacy and the young lady at the counter showed up with the bottle, rolled her eyes and said, "Yikes!". This was the same reaction I got from the pharmacy clerk at Costco, where I had gone to pick up this prescription on the previous Saturday. As an aside CostCo couldn't sell it to me because when they ran my Group Health card the latter refused the payment stating that I had to go to the Group Health Pharmacy for this purchase (those assholes [Group Health] are really on my shit list, btw). Then the afore mentioned young lady said, "Do you know how much this is going to cost?" I dead panned her with my now stock answer, "It's that or die." There is no real come back for that. Then the young lady told me it would be $651.50 - to which postal, nuclear bombs went off inside me (that is a 30 day, not 90 day supply).

Now I know it wasn't her fault, however the previous day I had spent almost 1 1/2 hours on the phone with three different people from Group Health verifying that the prescription would be correct and waiting when I showed up. Really. How does Joe Paying Customer get a mega buck giga corp to listen to him? It wouldn't be that huge, but I have already been shunted down to their pharmacy rather than a pharmacy of my choice, and once I get home I call my 3rd party to tell them I have the drug in hand and would they please send a reimbursement form, which takes 7 to 10 days to arrive, which I then have to fill out, affixing the original receipt plus the sticky prescription label from the bottle, then mail and wait an additional 4 to 6 weeks for reimbursement. Now, because they only coughed up 30 days I have to do this all again on April 1.

Anyway, bottom line, the drug costs $1303.00 per 30 day supply. Group Health will pay 1/2 leaving $651.50. The 3rd party (which happens to be the drug manufacturer) will then pay $500.00 leaving me with the remaining $151.50 per month for this single medication. That is on top of an addition $66.66 for the rest of my medications for a total of $218.16 per month. It could be worse, but, damn - that is coming close to a car payment, and the Wife really needs a new car.

However, the reimbursement form arrived in yesterday's mail which made it only 7 days and I have filled it out affixing all required labels. So, now that Susan Delfino (of Desperate Housewives) is going to be getting her transplant (oh, poor thing) I wonder if the writers will bother following up on how that only solves this handful of problems, but creates a whole new set to deal with.